Monthly Archives: July 2015

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[Written 20th October 2014, updated along the way, most recently 28th July 2015 ]

There’s a question that I’ve been trying to answer ever since I was first diagnosed with bipolar disorder and experienced the first obvious manic episode: how can I know when an episode of mania is coming on?

I have been working on answering this question for a while. Hence the start date for writing. It’s taken time, experience, reflection and I’m still not there yet. Here’s what I’ve got so far.

It’s not like people imagine. There’s no flash from the sky that strikes you down in the middle of your ordinary day changing you in an instant from deeply depressed to wildly happy.

There’s no sudden chemical reaction that causes an immediate switch from happy Harry to sad Sally. You won’t be mid conversation with me and I’ll sudden lash out with anger or anything dramatic like that. I promise. I also won’t suddenly slump into deep depression.

It’s much more subtle than that.

I have bipolar disorder type 2, or manic depression. As opposed to bipolar disorder type 1, or classic bipolar, which involves intense highs followed by agonizing lows.

In the six months or so before my diagnosis of bipolar, I would exist mostly in varying depths of depression with the odd dilly dally into sub-mania, or half strength, quarter strength mania. So sub-manic that I didn’t even know it was happening for the first few episodes! It was like a partial lessening of my depression, not very distinguishable from my usual depression. It certainly wasn’t the full mania thing; I didn’t get the happy, carefree, superhero mood to balance my sorrows. I actually noticed a worsening of my depression when the lighter mood ended rather than noticing a lightening of my depression. I felt that I was having cyclical worsening of my depression, whereas the mental health nurse in ED saw a recurring very weak mania.

Moods don’t change 50 times a day. I should know. When I was first provisionally (meaning this-is-what-we-think-it-is-but-we’ll-wait-to-see-before-we-commit-to-the-title) diagnosed with bipolar disorder I was in a phase called rapid cycling. As it kind of suggests, rapid cycling is where your mood cycles/changes rapidly! Pretty self explanatory.

What this meant for me literally was about once a week over three or four weeks I would descend into the big black pit from where I could see no possible exit other than stopping living in it. That’s what being suicidal is all about; utter hopelessness. It’s awful and very hard to bear.

But then I’d be a bit better again, and think, oh that wasn’t so bad. If it happens again I’ll definitely tell someone, but I’m okay now so it’s all good. Except that each time I went in it was worse! And worse, and worse until I was done with it! Luckily I had an appointment with my GP on the day I was done with it so that instead of being done, I went to hospital and you know the recovery story after that. Or if you don’t, it’s time to hit the archives!

So rapid cycling. Once a week, not once a day, 10 times a day or anything fantastical. That’s rapid cycling.

For the “regular” patient with bipolar 1…weird statement, I’m sure every one is different and there’s nothing regular about it!…mood changes might be more likely to occur every few months or even once or less per year. Maybe every few years once a person is medicated. But when they come, they can be a serious force to be reckoned with!

So my original question: how do you know when it’s coming?

I’m still not completely sure.

I’ve found that needing less sleep or unusually restless sleep, waking many times in the night and waking for good in the early morning hours is a sign of mania, which doesn’t rest, and wants to be on the move the whole time.

I usually have a couple of days of being more irritated/frustrated/annoyed about small things than usual. Ask my poor husband! I stub my toe and scream in full on rage at the pain and the stupidness of myself to do such a dumb, painful thing. I mess something up and totally lose it, raging at myself for my incompetence. I just can’t tolerate anything less than perfection in myself. I take a wrong turn in the car, get lost, run late and just burn up the road in furious outrage at my incapability to do anything right. I fumble my keys, my phone slips out of my fingers, 1 drop one of the 10 things I’m balancing in my arms while I walk blind down the stairs and write myself off as a useless, worthless human being! When actually I’m a regular human being possessed of a mood that makes me think I can do a lot more than I a) can or b) should.

At this point, the best way to end things and to not keep on getting worse and worse, is to go to bed and sleep. For however long it takes to wear off the mania.

It’s truly a strange disorder. In essence, this is what depression is, being upset and down on yourself, but this time instead of getting melancholy about being useless, I get mad, really mad! Not at you, don’t worry. The majority is forcefully muttering stupid, idiot, fool, dummy at myself under my breathe. The rest is taken out on my poor hubby, who tends to have a bad habit of laughing when I’m this mood and massively exaggerating the events of the day. Of course the more he laughs, the closer I get to bashing him with the rolling pin! Once the mood passes we laugh about it together, but at the time he makes me furious!!! Livid!!!

Then there is getting teary about silly things more than usual, although that can come with the depression cycle too. I’m naturally an easy crier, which goes against my attempt to be cool, calm and collected! I think I can see now that when these PMS-ish symptoms start, it’s time to take a breath and check what’s really going on. I say PMS-ish cause that’s how it kind of feels, although I maintain that I don’t get (much!) PMS…my husband prefers to not answer so who can tell?!?

Add some annoying heart palpitations which make me nervous about being anxious again and you have a pretty complete picture.

I suppose the more important question is, how do I know when I’m a bit manic? Easy! I have had some pretty perfect examples!

One day a while back, I woke up spontaneously at 5am without an alarm, feeling fully rested and completely ready to hit the floor running and get things moving! This from a famously unlover of mornings!
I had motivation, organisation, energy to boot and I’m full on into my job list!!! Check check check check check..what’s next???

All this despite being exhausted for the previous 4 days, not getting out of bed until 5pm one day a few days back and having a 4 hour “nap” two days before missing half of a family birthday! Whatever comes my way, today I’m all over it!
Before 8am I’d been for two laps around the park; most days I wouldn’t even be awake yet! And I never walk! I catch the bus/train/tram/friends car/taxi before I walk, except when Chester’s making an effort to get me out of the house and we do a slow stroll around the park…today I was striding! I was considering jogging! Today I’m on fire!

But I have to keep a careful check that I don’t get too cray-cray, too outgoing and chatty, too effervescent and bubble off the reservation! I don’t want to wander into the real manic territory of getting all spendy with the money I’m not earning, getting over confident with betting/gambling (not really a worry is my theory since I never do that anyway…), being over-enthusiastic/ambitious to the point of being a bit delusional or putting myself in dangerous situations that I think I can handle or just physically burning myself out being bouncy and happy and carefree and all over it!

The other classic manic thing is getting a bit over-affectionate…Chester won’t complain, as long as I keep it within the house!

And one perk: I’m so active, and busy PLUS I don’t get hungry as much and don’t wear out at all! So mania. Love it! Love it more when it stays more than a day or two but it’s usually pretty short lived. Love it the most when it isn’t followed by a big black lump of depression but that can be a common switch. In general, I’d prefer if I didn’t get depressed at all or manic at all. I love the energy of mania but it can also make me irritable, restless and impulsive and I start to get claustrophobic and nervous about all my typical old scary movie type phobias. And there’s nothing much I love about depression. So after an episode of sub-mania it’s back to the psychiatrist for a review and a new opinion of what to do next. I’m guessing there’s a lithium or valproate dose increase in the works…and that’s okay with me! Whatever it takes to get back to a comfortable holding pattern of “normal” moods. The aim is always for the lows to not be as low, and the highs not as high. Middle ground; that’s what we’re chasing. Here’s to it!

So, fortunately/unfortunately this has been the story of my bipolar. Fortunately I don’t get the massive mania with delusions, super hero thoughts and even hallucinations. Unfortunately my mood swings tend to be often, like weeks and months and they do throw me off balance each time. Despite what I’ve tried to learn about my mind and my body from my experience so far, and the fact that I know mood swings will come in spite of my meds, they still creep up and catch me unawares. And so far they do unfortunately seem to be getting bigger and more intense each time…but I won’t borrow trouble before it comes.

The last question is how can other people tell that I’m manic? My husband has some answers for that list! I may be a bit short with you, or seem a bit edgy and I will be less patient than usual. I’ll be more sociable than usual but it’ll be a bit fragile if things go wrong. I try to keep it together for everyone else but sometimes some sharp answers slip through my filter; I apologise in advance!

That moment when I first had that gut wrenching, crippling “oh my goodness, I really might never ever work or fill a useful role again” feeling is still too vivid in my Feelings and Memories department! It was so vivid! So very, very vivid. And that feeling continued to haunt me for a few sedated months of uselessness. A terrible, awful feeling to be useless!! The only thing worse, is not being able to visualize a scenario where you will become more useful! There is no hope to be found in that situation, and without hope it is hard to see the why in continuing to struggle, battle, grind away in life. A dangerous place, a slippery slope.

Before mental illness descended and took me down with it, I was used to thinking of myself as a reasonably highly functioning human being balancing my roles as a housewife, a pharmacist, a family member, a friend, a female. Yes, being a female is a role to itself! Maybe being a male is too.

But then suddenly I wasn’t acting in almost any capacity as a housewife to my husband’s grief! I wasn’t actively being a pharmacist apart from dosing myself with prescribed pills, I wasn’t really performing as a friend or family member. What was I? Nothing much, just sitting there useless watching hubby cook tea every night as well as doing the dishes, getting the washing caught up, and the ironing, remembering the bills, the mail, the bins. And I got puffed walking 10 steps! And just sat there watching him work away, unable to get myself up to do the slightest thing to help, feeling guilt, shame, grief at the terrible state I was in, and was inflicting on my husband. What kind of wife, what kind of person…and etc!!

So this is an enormous step that I’ve taken! The symbolism of it, of talking a step forward towards a better place, and the confidence it gives, and the assurance of a place of usefulness in this world, and the feeling of skills retained and still able to be used, and the comraderie of the workplace and shop talk are all delightful to me!

I’m not blowing my own horn here. It’s an enormous step that I’ve taken, but without the building blocks beneath it wouldn’t stand. Of course I haven’t yet proven that it will stand, that I’ll be up to the job, so we won’t get ahead of ourselves. But I have to acknowledge at such a momentous occasion in my life the bricks holding up my castle. That ED nurse that suggested bipolar who I treated badly, Tran the first psychiatrist, Dr Katz my lifesaver psychiatrist, Richard my lifesaving GP, my incredible and amazing husband, excellent friends who never left me through it all, new friends who’ve been a great support, every person great and small in my life who has been there for me. I appreciated each and every one. Truly. I might not say it much but you touch my heart!

And of course it isn’t a step that just happened! In fact when the ad came up, I wasn’t feeling ready to get started back at work. Still tired, not getting much done at home, resting and napping a lot. I saw the ad and thought too soon. Then a friend contacted me and said I’ve seen the perfect job for you! All excited. So I thought about it again. Hospital, half time, 5 minutes walk from home, clinical. All in the pros column. And what was in the cons column? I think I can’t. That was it. So seriously, Danika!! And I applied. Got an interview in 2 weeks time. Heard about my success in a weeks time. Meant to start in 2 weeks time. That got pushed back 2 weeks, then back 2 weeks, then another week. By the time I started I was well ready to go!

Just goes to show once more, you never know until you go!

I thought I wasn’t ready, but over 10 weeks I had ample time to get my head around how I would manage. So much so that I was over-ready to start by the time it came around. If that’s even a thing!

I’d thought about how I would dress to cope with overheating and leg chafing, and bought some better fitting clothes (read: bigger, but I like the first one!) to make sure I had enough changes to alternate. I’d bought new shoes and worn them in. I’d thought about my strategy if I got too tired, too stressed, too hectic, too flat. I’d planned what I would do on the nights between shifts to reserve enough energy to back up one day of work with another, and then another. I’d stocked the fridge with meals for the week so I didn’t have to think about meal planning or shopping. Over thinker much? But whatever it takes to feel ready, and to be free in my mind to apply it to the real job stuff, not house stuff.

And here I am!

I’ve started/restarted work.

The last time I worked an 8 hour shift was 28th February, 2014. Yeah. Wow!

So my biggest issue and concern is stamina. That’s the last time I maintained concentration for the full working day. Back then it was second nature. I worked 80 hour fortnights without blinking! I didn’t even think about it, mostly, until the depression started creeping in. Then the end of the day was a bit too far away for my comfort. The day’s got longer and longer! I needed more energy than I had on board and the sugary supplementation started.

That was 18 months ago. So I’m naturally unsure of how I’m going to go getting through each 8 hour day, but as people have so rightly advised me, it’s a day at a day and that’s all you can really work with.

I worked half day shifts a couple of days a week for the last six weeks of the last job I had in October of last year, and getting through those was a bit of an endurance effort at the time. But my meds have been changed since then, I’m nowhere near as sedated, and generally I’m functioning at a higher level. I even made dinner twice this week! And vacuumed, changed the bed linen, did a couple of loads of laundry and drying, groceries and put out the bins! If you’d given that list as a prediction to my hubby not so far back he, despite his polite ways, would have laughed out loud in your face! And I would have died inside merely at the thought of it!

So you see it’s general progress and not just the obtaining of a job that’s being celebrated, and you’re welcome to join the party!! Come on in, there’s plenty of room, bring your excitement and happiness and we’re going to have a great time!!

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Google+ has kindly written this one in photos for me! Who am I to look a gift horse in the mouth?

I met a large group of Wheel Women at 9am this last Saturday to do the entire loop of the city that is the Capital City Trail. This is a really interesting ride which goes by North Melbourne, heads straight through Docklands and South Bank, along the pretty Yarra to Burnley where we stopped to revive a bit, before going on through the Children’s Farm at Collingwood, around Yarra Boulevard in Kew then home along the Merri Creek to where we started.

In total we rode about 30 km which is a distance I’ve done a few times now and survived in reasonable shape. But this ride was tough! I believe it was described as “undulating” but me and me legs beg to differ. We prefer the term hilly! Of course a very cold start and heading straight into the undulations for several kilometers made it feel like my legs weren’t really working properly! I was pretty glad to arrive at the back of Docklands! The flat ride through to Alexandra Gardens was very acceptable.

Several people commented about how you can’t always ride on the flat, that you have to have hills, that it’s satisfying to conquer hills. We, my legs and I again prefer to have an opposing way of thinking: I could perfectly well be satisfied riding on the flat all day, taking in the scenery. Although I have noticed that I’m feeling the hills a bit less than at the start, I still don’t love them by any means.

So, I’ll leave it at that and you’re welcome to check out the link to view some of the photos I took. There’s the glorious sunshine, the pretty river and wattle trees, the Kanteen Cafe with bikes hanging everywhere and pretty cups, the original Skipping Girl illuminated sign in Burnley and a few other bits and pieces.

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Last week my husband and I were on holidays. Our brother and sister-in-law were getting married in Canberra at the end of the week, and what a great excuse for a road trip! Of course my hubby’s road trip was based around mountain biking, and mine around birding; but they’re surprisingly compatible and we had an amazing time exploring the coast from Melbourne to Tathra then inland NSW and ACT. Here are some of my bird adventures.

Sale Common Boardwalk under a threatening sky – great fun, apart from the sporadic drizzle

6th July 2015: I’ve been wanting to check out the wetland boardwalk at Sale for a few years, and finally we got there!

The second boardwalk proving my husband right, that the best might be ahead, when I was starting to wonder whether I could keep going

A mistake by me meant we went the super long way round, nearly 7 kilometres!!! I still can’t believe I made it, and my husband is extremely relieved that he didn’t end up carrying me! I’ve been working on my fitness lately but I would never have tackled that intentionally! It was very fortunate that the boardwalk adventure coinciding with a day when I was a bit manic, so I could manage it.

Pelicans flying in sync across a dramatic sky

Luckily it didn’t rain on us; the sky looked pretty threatening and the forecast wasn’t looking good. Fortunately there were just short light showers and drizzle then it would clear again.

The boardwalk is truly awesome, but a word of advice: walk along the first boardwalk then walk back to the start; same goes for the second boardwalk! Don’t try to do the loop; seriously chafed legs were the result for me.

But, success! A lifer in the gorgeous and seriously fast Silver eye! Yay!

Out of some fifteen odd photos this is the best one! Fast, agile, and always on the move!

This is one of the better focused shots, but always under a layer of foliage, making clear shots very tricky!

This was going to be the perfect shot…WAS!! This is the heart breaking side of bird photography; thinking you have an awesome shot and getting home to find that it’s awful! It’s okay small, but burns your eyes at full size!

We had incredible views of Black Shouldered and Whistling Kites, which was very exciting!

This kite is everywhere, but it can be hard to get a shot since they have super spidey sense to go with their robber mask

Always looking around suspiciously, and their head can rotate to 180 degrees so they see you coming for miles

Whistling Kite sitting on a rock taking in the surroundings after a meal of something gorey!

Gorgeous huge Whistling Kite whistling to its mate, the one above, about something or other

One of my favourites for the day was a stunning Great Egret. Due to the bright white colour against a gloomy day we could see the egret from both sides of the wetland!!

Poorly composed photo and all, but such a lovely graceful creature…and aware of our every move!

Some of the highlights were: feeding Sulfur Crested Cockatoos,

Chewing with his mouth open, tut tut!

a White Throated Treecreeper,

Not a great photo, but a fascinating few species of bird that run vertically up the tree feeding on insects on the bark

plenty of Grey Shrike-Thrush, one with a caterpillar

A nice juicy caterpillar for lunch

Lovely birds with a delightful singing voice, and one lucky bird with lunch!

Fairy Wrens dancing on the algae/moss covering of the river without falling through, so light and agile! This is an Eclipse Male, meaning a juvenile fairy wren morphing into a male with full blue plumage…you can see it starting to come out,

One of several Superb Fairy Wrens bouncing around on the surface of the river

a Pelican filter feeding in the river, dragging along the edge of the bank then using its enormous beak to filter the contents

I’ve only seen Pelicans at the seaside where they catch and scull fish…this behaviour is new to me

Tipping up its beak to filter the good stuff, then let the bad stuff go

and an Australian Darter drying out after a swim.

As you can see from the river, it had started to drizzle again…not sure how dry his wings are going to get!

I’d highly recommend the boardwalks; you’ll have a ball!

Next stop just past Swan Reach at Colquhoun Mountain Bike Park. Hubby set off in the rain and chill conditions because, you know, it’s a bike path! I had planned to bird watch around the path but actually it was pretty wet and cold so I changed my mind to sit in the car. I thought I’d watch a DVD to pass the hour but I turned on my laptop and remembered it had 7% battery from when I last had it on before leaving home. Annoying but oh well, I’ll borrow hubby’s…oh great, it has 10%! So radio it is!

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Remember a little while back when I was talking about what happens when I miss a dose of my meds? [Tales of a Missed Dose, 22nd June, 2015]

It’s not a fun experience, and so I go a fair way out of my way to make sure that I avoid it as much as possible! Probably my motivation is just as much to avoid the unpleasantness as it is to keep on my prescribed regimen.

So, how do I do it?How do I manage my medications?What is my system?

The strips. This is where the real stuff begins

Is it hard? Yes. Is it worthwhile? Absolutely! Does it get easier? Not so far.

Up until the last few months my medications have been all over the place, add one here, add one there, add one here…that went on for a while! Then the doses were changing and the psychiatrist was fiddling with timing and so on. But lately I’ve had the same meds at the same doses for a while, at least until a week or so ago, so at least I got into a bit of a rhythm with what I’m packing into my tablet box. Although then there’s the thyroxine which must be kept in the fridge, and you can only take 14 days’ worth out at a time. And there’s my lithium dose where I take two tablets every morning, but two and a half tablets on alternate nights with three tablets! That takes some keeping up with!

Then there’s valproate which literally cannot be taken out of the foil stripping until you need the dose. I found this out the hard way! The problem arises because I take the lowest strength available which is soluble, and therefore designed to absorb water as fast as possible once exposed. So the first week that I packed valproate into my box, I went to tip out my tablets the next morning and had more-than-soggy valproate! In fact it was more of a glob of paste that smooshed on your fingers and fell everywhere all at once! So I had to fish out all the goopy bits from fourteen small sections of my box and throw out some of my other tablets that had also become soggy and learned my lesson. So NOW, I get out my scissors with my shaky fingers and cut out all the tablets of a ten tablet strip, fold each of the sharp corners of the square into the middle so that it’ll fit into the box compartment, then put it on top of all the other tablets, and try to jam the lid shut. P.S. DO NOT swallow the tablet still wrapped in foil! It has been done, but thankfully so far not by me. I think the sharp edges would give me the hint well before it got as far as my throat; or so I hope!

So Valproate, I cut the strip into 10 squares, then fold the squares until they fit into the medication box with the other pills

But you’re a pharmacist, it’s probably easy for you?

I’m a pharmacist second, but a patient first. My systems and medication knowledge is invaluable in understanding my condition and sorting out my meds! In fact, I constantly wonder how people without that knowledge get by at all!! I say that because at times I feel like I’m barely keeping it together: what scripts do I need when I see the doctor (among all the other things I need to talk to him about!), what scripts do I have to take to the pharmacy to get dispensed this week, and when will I get there? What tablets are in low supply, do I have a current script for that? Have I got enough thyroxine downstairs in the fridge, an inconvenience to my medication box packing that the company did not consider strongly enough when developing their product?! Have I taken today’s tablets? Did I take the right time, like did I take the morning tablets in the morning or did I not look closely enough and accidentally take the sedating night time doses in the morning? Did I remember that I must not have fizzy drinks within two hours of taking valproate because it will dissolve much more quickly and make me drowsy? Loads of questions and loads of answers, and it’s still tricky matching them up properly!!

The many faces of scripts, handwritten, computer generated and the pharmacy yellow slip. And yes, my doctors have terrible handwriting!

So here are my many systems.

A very short time into my Prep year, my teacher commented that I’d lose my head if it wasn’t screwed on! This wasn’t prophesy or prediction of how my life would turn out, but simply a comment on how I was then. I was only 5, but I remember it clearly. It was a kind of epiphany moment. She didn’t mean it maliciously, but it was a pretty apt saying at the time, and for quite a few years to come!

Being organised probably comes from my Dad’s side. Every week he would strip back his tradie van to the bare essentials, remove all the Coke bottles and get it stocked, clean and ready to go again. Of course a lot of his motivation was listening to a footy match on the radio on his own without noisy kids! He would come home at night and the messy house was a constant trial to his patience!! He would get up a head of steam and do a week’s worth of chores before dinner! We all just vanished into the paint work and let him get it done; making any kind of noise meant you might get a faceful of steam!! When I was in primary school, he taught me how to pack for a holiday systematically, starting from the feet and working all the way up to make sure you don’t miss anything. Shoes, socks, tights, skirts, tops, dresses, hair ties, hats etc. I used this for packing, but the rest of my life was less designed and more accidental. Rushing from place to place having too many things to physically fit into the hours of the day and accidents happening all over the place! That came from my mum. Surprisingly, since my mum’s mum is uber organized. Forgot my lunch, forgot my jumper, left my USB with my presentation at home, missed a deadline etc! None of this really taught me the life lesson you would think it should!

The real deal, all of my many tablet boxes and one bottle…and there’s one box in the fridge

Studying pharmacy was a revelation to me, and it really has gradually changed my approach to life. So has the last 12 years with my now-husband, who is very systematic and had taught me a lot about being organised. Pharmacists have to be so systematic that there is almost no possible way that an error can occur. Each of us has to work out our own system that doesn’t fail when curveballs come out of nowhere, but is a failsafe as much as possible. I’m not going to go through that because its tedious from the outside, but next time you’re waiting in a pharmacy, and they’ve told you the script is going to be 10 minutes even though that’s not possible, and you’re wondering what they’re doing, distract yourself wondering how that pharmacist is ensuring your health and safety.

Bag of medications disguised as something pink and desirable! Cunning

So my medication taking has become a system. It didn’t start that way, because at the start I was on one antidepressant. That doesn’t take a lot of managing apart from remembering to take it! Then I was on two antidepressants, one in the morning and one at night. That took a bit more remembering. Then the pivotal moment when I was diagnosed with bipolar and started on a mood stabilizer, and another one, and another one. It got too much to keep in my brain, so I took the old person option and got myself a medication box so that I could make up a week’s worth of pills at a time, and stay ahead of the game, instead of waking up in the morning to get ready for work, and finding I didn’t have any more of a tablet! Having to squeeze a trip to the pharmacy into my already tight getting-to-work schedule was essential, but stress-inducing!

Nearly done, got to visit the fridge and fold the silver squares

I have an up-to-date medication list that I’ve written on the back of the box, and that I keep a copy of in my handbag, and a copy of in the NPS Medicines app on my phone, and which I update after every doctor’s visit if any medication changes have happened. This is vital. If anything ever happens, the first thing your hospital pharmacist will ask for is your medication list. Having it up to date means increased safety for you. That’s the most important thing. We don’t want to give you something that will make you worse by allergic reaction or by interaction with your current meds or your medical conditions.

The ‘official’ medication list, updated every doctor’s visit…maybe I should type it out to make it look less made up!

Every week when there are only a couple of doses left in my box, I repack it according to my list. I cross check each tablet as I pack it, i.e. I take venlafaxine 450mg, which is 3 capsules of 150mg, so I check the list and pop out that many tablets. It sounds so easy, but an error right there could be catastrophic. Cross checking makes sure every prescribed medication ends up in the box, in the correct amount, at the correct time of day, every day. So I sit up on my bed and surround myself with boxes and strips and bottles, my list and my box. It’s actually a satisfying job, ticking each med off one by one and ending up with a neat and tidy box of lifesaving pills. I end up with a massive pile of rubbish, mostly in the form of popped out strips. Pharmacy isn’t exactly a green industry; the medications demand certain wrappings and changing that order would be unsafe.

Ready to go! Time to concentrate, accidents do happen but good idea if they don’t!

Unfortunately the names of the days have rubbed off the box and remembering the order wasn’t working so I had to relabel the medication spots. I ended up writing AM or PM as well, because a couple of times I’ve taken the morning medications at night and ended up not sleeping for hours, or taken the night meds in the morning and been doped out all day! That was because I started checking on autopilot and not really checking. So now reading the label of the dose reminds me, hopefully, whether I’m meant to take that dose or not.

System change #71! Always updating and changing to improve my safety

Forgetting is a big part of my life now. I start a story and can’t remember why I was telling it, I can never remember names, I forget a conversation from earlier that day, and many other things. Pity help me if I get to 80!! My husband will have gone mad by then! So I have alarms. I’ve always done this since I only had one med. First it was an alarm that you switched off. Then I’d forget all the same. So I changed my alarm to being able to be snoozed three times. I’d snooze it three times, and forget! Procrastination much?? So I found the NPS (National Prescribing Service) excellent Medicines app and put some alerts in there for the morning and night. These can be snoozed endlessly so I know that it won’t let me forget!

The cool app from the good folks at the National Prescribing Service – recommended!

When it’s time for my tablets, I go to the box and look for the day and the time. I tip out all the tablets, and take the foil off the valproate. I count the tablets against the mental dose list, or actual dose list if I can juggle the tablets in one hand and box in another. I check that each tablet for that time of day is there, and in the right dose then scull them! My husband hates this, he thinks that I should take them one at a time, but that would take forever! I’d rather just get them down as quick as possible.

I’ve developed a new system now. My alarms go off at 8.30am and 8pm. I’m meant to take my tablets when the alarm goes off, but however systematic I am I’m still a procrastinator. I know that my tablets are keeping me in the good life, and that without them I’d be in all kinds of awful, but there’s still that little part of me that doesn’t want the tablets, because it doesn’t want the illness! A small part of me that has the hopeful thought that maybe if I don’t take them everything will just go away. Of course that’s ridiculous! But it’s just how it is. So I snooze, and snooze, and snooze. Ridiculous and childish but there you have it! I can’t imagine how much more difficult it must be for people who don’t acknowledge their illness, are in denial, believe the medications are evil or unnecessary or poison, or are being medicated against their will.

My husband does a good job of asking me if I’ve taken my tablets, but my memory is absurd and I remember taking my morning tablets and say yes I’ve taken my night tablets. A couple of times I said yes yes, and I hadn’t taken them. So now, once I’ve taken them, the lid stays up, I don’t clip it down again, and so both of us at a glance can tell if I’ve taken them or not, no confusion.

Some are empty, some are closed and it helps me keep track and avoid slip ups

Well that’s about all my systems. I try to avoid anything that relies on memory, and try to have a clear, repeatable, systematic way of keeping well. At the end of the day, its fingers crossed and trust in all the steps that have been taken to take care of me.

So this week was going to be epic! Until it rained, and rained, and rained. And spoilt my plans! I had my diary set: Tuesday ride from Strathmore, new one for me so that should be fun, Thursday repeat of an earlier ride from Maribyrnong to Williamstown, but hopefully no head wind on the way back this time and so a more enjoyable return! Then there was a ride on Saturday, to follow up our skills session with Bridie O’Donnell, along Beach Road for a road ride. That was a tentative. I haven’t done a road ride in years, and never in a bunch, and not since uni days, and was I really up for it? Definitely a query! In the end I read the updated description and it was for riders above my level so I let that one slide.

Tuesday I was up and at ‘em! This being the most recent morning after the night before when I missed my tablets! So I was firing on all cylinders! Chatty, energetic, ready to kill it on the ride! Etc! But it was cancelled. It wasn’t actually raining but it had been pouring with rain at 3am when I woke up for the day on a short amount of quetiapine-absent restless, fractured sleep! Our leader had been out to check the course and it was wet and slippery. And honestly, I’m having such a good time, and haven’t crashed since my chest infection-induced stupor in week 3 and I’d like to keep it that way. Don’t need any discouragement! So it was cancelled, but there’s always coffee and cake,Whee girls!! So I traipsed across town anyway for a good old catchup! And a divine cookie sandwich!!! I haven’t come across these till now, other than a Maxibon, but these are two yummy flaky bikkies with, in my case, vanilla bean cream in the middle! Very indulgent and just the best! Pin Oak Crescent, Flemington, people, opposite Newmarket Station! Wolf and Hound if I remember correctly! Worth the drive.

A Butterbing cookie sandwich and coffee at Wolf and Hound – not my coffee obviously

So that was all good, no ride for understandable reasons, and nothing could bring me down that day in any case, so a great day to bear with not getting to do what you hoped! When I say nothing could bring me down, I mean being too scatter brained to bring my phone charger, and my phone going flat from running GPS directed maps just as I got to the edge of my comfort zone and needed directions! But bipolar brain is super human and says, oh well, just drive up Flemington Road; you’re looking for an address in Flemington, you might get lucky! Well now we’re in Moonee Ponds so let’s turn around (not easy to accomplish!) and find a 7/11, surely they sell Melways. No you don’t? But I see a copy there, maybe I can just look up an address? Use your phone, are you sure, really I can look it up? Thanks, you’re a lifesaver, actually look it’s just nearby, 2 turns from here! Perfect, and I’m right on time! Thank you manic bipolar brain, you got through that mishap easy as pie. Of course, it is your fault about the charger…but everything else was great!

Cue Thursday. Restarted quetiapine on Tuesday night. There’s still some in my system, but miss a dose and boy, does the next dose feel like the first one! That first dose gives you the full side effect gammit: drowsiness like I’ve been dosed up with morphine, absolutely stupid after half an hour of taking it, cannot form words or walk anymore! Dry eyes makes them fully red which is just perfect for looking like a slurring, incoherent, stumbling lunatic if you happen to need the loo bad enough to get your eyes open and magically force yourself out of bed! Nose, eyes, mouth as dry as the desert, can’t pee or poop as much and boy is it hard to wake up the next day! Even if you wake it takes all morning for the sedation to wear off. Often I’ve just given up and gone back to bed at 9am, 10am, 11am. So Wednesday was not much of anything! In fact I sat in the same spot for the majority of the day once I finally got up at 11am to get breakfast. Think I did a load of laundry. Watched some Agents of Shield. Played Words with Friends. Ate lunch at 4pm. Tried to get my brain around our Wednesday bible study chapter. Started to think about dinner, then waited for my hubby to come home and make it. Bit of a washout day. But I knew that was coming, so yeah.

Love this game! My husband isn’t such a fan, reckons I let him win so he’ll keep playing with me…so he stopped playing with me! Always happy to play with new people. This is one of the few activities that helps me feel like my brain isn’t rapidly shrinking!!

Thursday. Plan: repeat ride to Williamstown, without the head wind on the way back, if it please the Weather Bureau! 28 kilometres, gorgeous scenery, good friends, what more could we ask for? The forecast was 13 or something, but I have my neck gator, my head scarf, my new arm warmers, gloves, and a vest and coat to layer over my jersey, so no worries, plus I’m always warm on the inside! Despite the hangover effect, when my alarm went off at 8am I jumped right out of bed! Miraculous! Truly miraculous. The joy of the ride, the pleasure of good company, the scenic delights awaiting; my brain is on full anticipation mode, waiting for the lovely things the day will bring, which will in turn deliver to me those much lauded blessings of endorphins, serotonin, dopamine, etc. It’s the dopamine that has the upper hand if you ask me. Once I finally got to that place of enjoying in my riding, my dopaminergic system started its reward seeking behavior that drives addiction. There, I said it, my brain is starting a powerful connection between riding and good things, and it wants more!

I’d organized to car pool with a friend from the course, the first time Little Miss Independent has let someone else take the wheel and do the driving. A big moment of letting go the control, and making friends! So nice to be trusted to go to someone’s house, meet their family, share an experience together. I’ve always considered myself a bit awkward socially, a bit challenged at making friends and as a little kid especially this was true. I’ve had my own friends, my school friends, and work friends. But I’ve always had my own space, where no one else goes. I’m finding it’s different with riding, because you really share common experiences so we have something together that binds us, and no external person can really share in it because they weren’t there. It’s fascinating to me, to see how this works, and to be a part of it! We share our insecurities, our weaknesses, our doubts in a way probably none of us would fully own out loud in any other situation, and probably not with our partners or other friends. Because in this course it’s okay to be scared, to not know, to be worried. It’s ALWAYS okay to be how you really are and what you really feel and no judgement is even thought of, because this is a place of learning and building up skills and encouragement and doing it together. That’s why we love it!

One from the archives. Back when I could still fit into my wardrobe, barely, March 2014. Remember I told you my hubby took me for a ride and it wasn’t the best? This is it! A brave smile!

—RIDE CANCELLED— As I’m walking out the door, socks, runners, leggings, jersey, neck warmer, ear warmer, gloves, vest, coat, lights, ready to go to my friend’s house to car pool, my phone beeps. I’ve got my bag with helmet, bike computer, bike mechanic kit etc on my shoulder, I’ve grabbed breakfast, filled up my drink bottle, got the car keys in my hand, bike in the car…cancelled! Cancelled! Ohhhhh. Deflated! But I’m ready to go! But that was the last organized ride for the week that was at my level! But I’m up, and if it was any other day I’d be asleep til 10am while restarting quetiapine, but I’m up! I’m up! Okay, so it’s wet and slippery, but I’m up!

This is no criticism of Wheel Women ride organization! They do an amazing job many times each week, and absolutely made the right call! No disagreement. But I was up! And I wouldn’t be if it weren’t for the anticipation of friends and bike riding. Which is obviously a powerful thing, more than I would have ever expected from myself! So what now? Honestly I was flummoxed, wind taken out of my sails, left without purpose! So I sat down at the kitchen table, stared blankly at the wall and tried to think of what to do! Called my husband cos I was all out of ideas! Couldn’t think what to do next! It really had hit me for six, even though I always knew it was weather dependent. But I was going to go out and tackle that ride anyway, and do better. And now I wasn’t going anywhere! Huh!

A stunning Williamstown day on another ride

That was a great lesson to me, to find how much I depended on going riding, and expected to go, and could go the extra mile to get to the rendezvous point on time and all organized, because I wanted to go! Here are some powerful abilities that I can harness and use!

So, what to do? Actually I had a pretty flat day, which is so interesting to me, and something I can work on for next time for whatever disappointment inevitably comes. How can I response differently, better, not let myself get so deflated? I was still in a pretty soggy condition when my hubby got home so he set me to think up rides that I could do the next day. It was a great idea, but I parked it on the shelf. Right now though, I’m inspired so I’m going to try to do that, write a to-do list of bike rides for the future so that I always have a backup plan.

Inspired. Me, right now. Why? Its two days on from Thursday, and today I went and did that ride that was planned and cancelled with my husband, and it was great! The weather was cold but sunny, the scenery is always spectacular on that route and we had fun! Then we went and checked out the cyclocross race nearby and I got my fix of bikes and I’m feeling fine! Better than, in fact. It’s 10.48pm and I’m still tap tapping these ideas that were floating in my head while riding. Turns out riding really gives your head space to process ideas!

Silver gull parade!! These ‘rats of the sea’ are standing guard waiting for the woman to finish her meal and hopefully leave some chips so they can all swoop in and grab the scraps

And that’s not the end of the victory parade.

The following Tuesday our ride was cancelled before the actual day. But I woke up that morning to a text from one of the lovely girls in our group asking if anyone wanted to do a replacement ride. What a genius, and what a great idea, and perfect for feeling like we haven’t missed out. Yes I did want to do a ride, so we met up really close to home and did an 18km ride together. It was a bit tougher than a lot of our other rides with a few challenging hills but we looked out for each other and I felt so satisfied by the time we got back. We had a nice coffee and cake at a cute new café, and I just loved it! Being independent, and able to tackle a decent ride on our own, and feeling like we’re capable and equipped; satisfaction! And it feels like a victory! I still want to do as many organized rides as I can, but what a feeling to be able to run our own ride if it falls through! Yay!!

So on Thursday, when the ride was ‘only’ 13km, we improvised and went the long way back to the cars together to draw the ride out to 24km. Imagine that! After such a slow, difficult start, I now feel a bit cheated if we don’t do 20km! I mention ‘only’ because the leaders would sometime say this to us, it’s only 6km, its only 13km etc. And I would think to myself, only, ONLY?? What are you talking about, only! I’m not at the only stage, every peddle stroke hurts. It was fascinating on Thursday because we rode the first ride we ever did to the bike store, which I thought would never end as I wheezed and sweating and burned my way along the ‘only’ 6km. And this time we got there in 10 minutes, before my legs had even warmed up, and suddenly we were there and I couldn’t believe how it didn’t hurt, or require much effort and we passed it like it was a kilometre from the car park!! That’s progress, and it’s so exciting!!